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The experience of living with patellofemoral pain-loss, confusion and fear-avoidance: a UK qualitative study.

ABSTRACT: OBJECTIVES:To investigate the experience of living with patellofemoral pain (PFP). DESIGN:Qualitative study design using semistructured interviews and analysed thematically using the guidelines set out by Braun and Clarke. SETTING:A National Health Service physiotherapy clinic within a large UK teaching hospital. PARTICIPANTS:A convenience sample of 10 participants, aged between 18 and 40 years, with a diagnosis of PFP and on a physiotherapy waiting list, prior to starting physiotherapy. RESULTS:Participants offered rich and detailed accounts of the impact and lived experience of PFP, including loss of physical and functional ability; loss of self-identity; pain-related confusion and difficulty making sense of their pain; pain-related fear, including fear-avoidance and 'damage' beliefs; inappropriate coping strategies and fear of the future. The five major themes that emerged from the data were: (1) impact on self; (2) uncertainty, confusion and sense making; (3) exercise and activity beliefs; (4) behavioural coping strategies and (5) expectations of the future. CONCLUSIONS:These findings offer an insight into the lived experience of individuals with PFP. Previous literature has focused on pain and biomechanics, rather than the individual experience, attached meanings and any wider context within a sociocultural perspective. Our findings suggest that future research is warranted into biopsychosocial targeted interventions aimed at the beliefs and pain-related fear for people with PFP. The current consensus that best-evidence treatments consisting of hip and knee strengthening may not be adequate to address the fears and beliefs identified in the current study. Further qualitative research may be warranted on the impact and interpretation of medical terminology commonly used with this patient group, for example, 'weakness' and 'patellar mal-tracking' and its impact and interpretation by patients. TRIAL REGISTRATION NUMBER:ISRCTN35272486; Pre-results.

SUBMITTER: Smith BE

PROVIDER: S-EPMC5786111 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

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The experience of living with patellofemoral pain-loss, confusion and fear-avoidance: a UK qualitative study.

Smith Benjamin E BE Moffatt Fiona F Hendrick Paul P Bateman Marcus M Rathleff Michael Skovdal MS Selfe James J Smith Toby O TO Logan Pip P

BMJ open 20180123 1

<h4>Objectives</h4>To investigate the experience of living with patellofemoral pain (PFP).<h4>Design</h4>Qualitative study design using semistructured interviews and analysed thematically using the guidelines set out by Braun and Clarke.<h4>Setting</h4>A National Health Service physiotherapy clinic within a large UK teaching hospital.<h4>Participants</h4>A convenience sample of 10 participants, aged between 18 and 40 years, with a diagnosis of PFP and on a physiotherapy waiting list, prior to st ...[more]

PMID: 29362256

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Project description:ObjectiveSome children with chronic pain struggle with fear of pain, avoidance behaviors, and associated disability; however, movement adaptations in the context of chronic pain in childhood is virtually unknown. Variability in adaptive movement responses previously observed between individuals might be largely explained by the presence of problematic psychological drivers (eg, fear, avoidance). The goals of this study were to quantify the variability of gait and examine relationships among pain, fear, avoidance, function (perceived and objective), and gait variability.MethodsThis study used a cross-sectional design. Eligible patients were between 8 and 17 years of age and had musculoskeletal, neuropathic, or headache pain that was not due to acute trauma (eg, active sprain) or any specific or systemic disease. Participants completed the Numeric Pain Rating Scale, Fear of Pain Questionnaire (FOPQ), Functional Disability Inventory, and 6-Minute Walk Test and received kinematic gait analysis. Relationships were analyzed among these measures, and the self-report and functional measures were examined to determine whether they predicted gait variability (GaitSD).ResultsThe 16 participants who were evaluated (13.8 [SD = 2.2] years of age; 13 female) had high Numeric Pain Rating Scale scores (6.2 [SD = 2.1]), FOPQ-Fear scores (25.9 [SD = 12.1]), FOPQ-Avoidance scores (22.8 [SD = 10.2]), and Functional Disability Inventory scores (28.6 [SD = 9.4]) and low 6-Minute Walk Test distance (437.1 m [SD = 144.6]). Participants had greater GaitSD than age-predicted norms. Fear was related to self-selected GaitSD, and avoidance was related to both self-selected and standardized GaitSD. Avoidance predicted 43% and 47% of the variability in self-selected and standardized GaitSD, respectively.ConclusionGaitSD was significantly related to both fear of pain and avoidance behaviors, suggesting the interplay of these psychological drivers with movement. FOPQ-Avoidance was robust in accounting for GaitSD.ImpactThis study offers preliminary evidence in understanding movement adaptations associated with adolescents with chronic pain. They may lend to more directed interventions.

Project description:The purpose of this secondary analysis was to test the hypothesis that an empirically derived psychological subgrouping scheme based on multiple Fear-Avoidance Model (FAM) constructs would provide additional capabilities for clinical outcomes in comparison with a single FAM construct.Patients (n=108) with acute or subacute low back pain enrolled in a clinical trial comparing behavioral physical therapy interventions to classification-based physical therapy completed baseline questionnaires for Pain Catastrophizing Scale, fear-avoidance beliefs [Fear-Avoidance Beliefs Questionnaire (FABQ)-physical activity scale (PA), FABQ work scale], and patient-specific fear (Fear of Daily Activities Questionnaire). Clinical outcomes included pain intensity and disability measured at baseline, 4 weeks, and 6 months. A hierarchical agglomerative cluster analysis was used to create distinct cluster profiles among the FAM measures and discriminant analysis was used to interpret clusters. Changes in clinical outcomes were investigated with repeated measures analysis of variance and differences in results based on cluster membership were compared with FABQ-PA subgrouping used in the original trial.Three distinct FAM subgroups (Low-Risk, High Specific Fear, and High Fear and Catastrophizing) emerged from cluster analysis. Subgroups differed on baseline pain and disability (P<0.01) with the High Fear and Catastrophizing subgroup associated with greater pain than the Low-Risk subgroup (P<0.01) and the greatest disability (P<0.05). Subgroup×time interactions were detected for both pain and disability (P<0.05) with the High Fear and Catastrophizing subgroup reporting greater changes in pain and disability than other subgroups (P<0.05). In contrast, FABQ-PA subgroups used in the original trial were not associated with interactions for clinical outcomes.These data suggest that subgrouping based on multiple FAM measures may provide additional information on clinical outcomes in comparison with determining subgroup status by FABQ-PA alone. Subgrouping methods for patients with low back pain should include multiple psychological factors to further explore if patients can be matched with appropriate interventions.

Project description:BackgroundEach year over five million people develop chronic non-malignant pain and can experience healthcare as an adversarial struggle. The aims of this study were: (1) to bring together qualitative evidence syntheses that explore patients' experience of living with chronic non-malignant pain and develop conceptual understanding of what it is like to live with chronic non-malignant pain for improved healthcare; (2) to undertake the first mega-ethnography of qualitative evidence syntheses using the methods of meta-ethnography.MethodsWe used the seven stages of meta-ethnography refined for large studies. The innovation of mega-ethnography is to use conceptual findings from qualitative evidence syntheses as primary data. We searched 7 bibliographic databases from inception until February 2016 to identify qualitative evidence syntheses that explored patients' experience of living with chronic non-malignant pain.ResultsWe identified 82 potential studies from 556 titles, screened 34 full text articles and included 11 qualitative evidence syntheses synthesising a total of 187 qualitative studies reporting more than 5000 international participants living with chronic pain. We abstracted concepts into 7 conceptual categories: (1) my life is impoverished and confined; (2) struggling against my body to be me; (3) the quest for the diagnostic 'holy grail'; (4) lost personal credibility; (5) trying to keep up appearances; (6) need to be treated with dignity; and (7) deciding to end the quest for the grail is not easy. Each conceptual category was supported by at least 7 of the 11 qualitative evidence syntheses.ConclusionsThis is the first mega-ethnography, or synthesis of qualitative evidence syntheses using the methods of meta-ethnography. Findings help us to understand that the decision to end the quest for a diagnosis can leave patients feeling vulnerable and this may contribute to the adversarial nature of the clinical encounter. This knowledge demonstrates that treating a patient with a sense that they are worthy of care and hearing their story is not an adjunct to, but integral to health care.

Dataset Information

The experience of living with patellofemoral pain-loss, confusion and fear-avoidance: a UK qualitative study.

Publications

The experience of living with patellofemoral pain-loss, confusion and fear-avoidance: a UK qualitative study.

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